Tuesday, June 02, 2009

An Update...

So, I figured it was probably time for an update. If you haven't noticed, I'm not really the blogging type. :)

That said, Gary & I are doing well and are about to embark on the next stage of our journey as we pack up and head back home to Arizona in the next month or so... There's not much here in MO for Gary & I other than memories, and unfortunately, most of them aren't happy ones... (That's not to say we didn't have joyful times in the midst of our trials or that we haven't grown from this experience...)

I'm still working on finishing Amy's book. It was a larger project than I anticipated, and I was much closer to being finished months ago, but didn't really like how it was turning out, so I scrapped a large section and started over from almost the beginning. I don't want to put a timeframe on completion, but I do have my publishing and distribution all taken care of. I had some interesting marketing ideas I thought I'd try to work out with some of my contacts in the music and book industries, but I don't know how feasible they'll be without having to back out of the publishing and distribution goals I already have in place. Anyway, the goal of the book is to spread her story, and through it, evidence of God's faithfulness, sovereignty, and His glory and not to make money, so there will definitely be a free downloadable version available and it will be protected with a Creative Commons license instead of a standard copyright to encourage duplication and sharing.

I followed Amy's story for the last few months of her life and I was really touched. (And her story really isn't over in some ways.) At any rate, I'm a resident book reviewer and when you get the book completed, if you want to send some copies my way, I'd love to promote your message. (My dad just died of cancer 2 weeks ago so I feel a little bit closer to your message than I did before!)

My reading site:

readingtoknow.com

I'm a staff revier at 5 Minutes for Books and I'd love to push it there also, if you should feel so inclined:

i came by to tell you I haven't forgotten Amy either. I only read her thoughts from her postings, I never spoke to her directly. Somehow I was touched by her candor and I sometimes hear her words as I go through my day. I look forward to the book and even more to meeting her in heaven.

sI was thinking of you and looked up the blog.Luittle did I know that you had an actual update.Hope all goes well for you in Arizona.Yiour hands must be full with a 3 year older that proably talks your ear off!

Hopefully that will improve health for all on this, the government must give force to the health sector, as there are many people who suffer from chronic illnesses and who need help to cover expenses stronger as fibromyalgia, leukemia, producing a series very heavy cost to those who suffer as they must take powerful drugs such as oxycodone, Vicodin, Lortab, drugs that are highly controlled and that findrxonline indicate that opioids are very strong and anxiolytics do not know if that can be given life-threatening that consumes, that is why many times the costs are too high to be able to obtain and soothe the intense pain.

Brandon, I look forward to Amy's book. I will keep watching for when it is available. Many of the nurses here on 5 East remember Amy, Gary, yourself, and all of your family fondly and think of you from time to time. When Amy's book is available, I will be sure to let others know so we can share in the joy that comes from reliving Amy's triumph. For even though the evil one took her from you, she won because her loving Savior defeated death for her. Praise God. Best of luck as you and Gary move back to Arizona and move to the next part of your lives. God Bless.Sharon Van Arsdale FNP, Symptom Evaluation Unit - 5 East UHC

Brandon,I met Amy and her mom in the SEU as she was preparing for transplant #2 and I was preparing for transplant #1. We were scheduled to be on the 5900 at the same time for our transplants. I always check for your updates and I do hear from Anita now and again. I wish you and Gary all of the best as you move to the next place you are needed. Please keep us posted on this new jouney and also let us know when the book hits.

Timeline

August 2007 - Clofarabine & Cytarabine with possible second transplant

August 2007 - Intrathecal Methotrexate

June - July 2007 - FLAG w/ mylotarg

April 2007 - AML M4 MLL-ELL Diagnosis

March - June 2007: Experimental DLIs

March - June 2007: Decitabine 5/28

November 2006 - Allogeneic Stem Cell Transplant (brother)

September 2006 - Salvage Regimen - MEC

July 2006 - Reinduction - Cytarabine & Daunarubicin 5/2

July 2006 - Induction - Cytarabine & Daunarubicin 7/3

July 2, 2006 - AML M4 Diagnosis

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus may also be manifested in our mortal flesh. So death is at work in us, but life in you. Since we have the same spirit of faith according to what has been written, 'I believed, and so I spoke,' we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. - 2 Corinthians 4:5-18